Tammy Cottingham has a passion for books but has been unable to read for the past two years.
Since being diagnosed with myalgic encephalomyelitis (ME) in 1998, she been unable to pick up her favourites for fear of the pain she might suffer.
She said: "If I try to read for more than a few minutes, I get tight ache at the back of my neck which spreads all over my head. It's like somebody is squeezing my head tightly and there is a fog in front of my eyes.
I can't read the words and begin to feel sick."
To prevent the pain, 26-yearold Tammy has learned to avoid any activity that involves concentrating for too long.
Her neurological symptoms also mean she is unable to work.
She said: "Even listening to the radio can make me feel have to lie down. I can be thinking something one minute, and the next minute I can't remember what it was.
"It's very frightening and knocks your confidence in your ability. I am unable to form sentences properly and that's very difficult to cope with."
Tammy was diagnosed with ME, also known as Chronic Fatigue Syndrome (CFS), while still a happy-go-lucky student at Birmingham University. She was in the final year of an English and Theatre Studies degree but was forced to abandon the course just months before graduation.
She said: "When I was first ill just thought I was suffering recurring bouts of the flu. But was abnormally tired and my legs would feel like jelly.
"I'd set off for university and all I would want to do was sit down in the middle of the road.
It was a gradual onset but I was so exhausted I knew something was wrong."
Tammy's homeopathic doctor suspected she might have ME. Her consultant at St Bartholemew's Hospital in London confirmed her fears.
Tammy moved back to her parent's home for two years, until eventually feeling strong enough to move into her own flat in Lewes. She said: "It was a real shock to go from university life, where I went to the pub with my friends, to being dependent on my parents.
But I had no choice. When I was very ill, my mum used to wash my hair."
Like many of the 150,000 ME sufferers up and down the country, Tammy has no idea what triggered the condition. No single cause of the illness has been identified but it is thought that a viral infection or traumatic incident are contributing factors.
Symptoms are varied and affect the sufferer physically and mentally. One person can suffer terrible muscle pain as their main symptom, while another is bedbound through exhaustion.
A collapse of the immune system can be accompanied by mood changes, disturbed sleep patterns, alcohol intolerance, short-term memory loss and gastric problems.
For years ME was dismissed by the medical profession as yuppie flu" and Tammy believes it is only recently that doctors and the public have begun to take it seriously.
She said: "There is a perception that ME is not really an illness and that a person is just tired or depressed. Somebody with ME doesn't necessarily look ill all the time and it can be hard for doctors and friends to accept that.
"People just assume that I am suffering from burn-out, rather than accepting ME for the complex illness it actually is.
Doctors like to be able to give you tablets but they can't for ME. It is not properly understood and therefore tolerance levels are low."
Tammy is keen to try out new treatments that may alleviate her symptoms.
Homeopathy has had a limited effect but she hopes anti-bacterial treatment may bring results.
She said: "Homeopathic remedies can alleviate symptoms but these cost a fortune and many people with ME are on income support because they can't work. In America, doctors believe that ME could be caused by a form of candida in your gut.
I'm taking tablets and following a diet plan that has worked for other people."
Stark patterns of relapse and remission are typical of ME and the illness can last for any period from one year to a lifetime.
Nevertheless, Tammy tries to remain positive about her future. Her close friends still visit regularly and she met her boyfriend, Jonathan Burrell, through the Sussex ME/CFS Society.
She said: "I want to write novels and scripts and finish my degree, which makes me determined to get better. I find it so distressing not being able to read as I've always been a very academic person. I used to love debating and finding out information.
"Being with Jonathan for the last two years has made me really happy. He's somebody that I really love and am close to, and he knows exactly what I'm going through." Jonathan, 38, has had ME for 12 years and is aware of the how debilitating the illness has been for Tammy.
He said: "You really don't know if you can rebuild your life once you've been diagnosed. You just exist from day to day. Even when you're having a good patch, you are aware that relapse can be just around the corner."
Jonathan, of Farm Road, Hove, had returned from a two-year trip travelling the world when he was diagnosed with the illness in 1989.
He had been planning a cycling trip across the Sahara but the sudden onset of ME forced him to re-evaluate his future.
For six months he visited doctors in a bid to discover the cause of his fatigue but little was known about ME and he found GPs unsympathetic.
He said: "One day I was at work and the next day I was in bed. I was told to ignore whatever it was and carry on, which was so counterproductive."
Jonathan was bedbound for the first three years of his illness and rarely left the house for the next three years.
He said: "I lived with my mum which was a step back to being a child. I felt isolated as for weeks on end she was the only person I ever saw.
"I suffered terrible muscle pain, headaches and sore throats. I also had trouble sleeping and there is nothing worse than lying awake in the middle of the night worrying about what is wrong with you."
Jonathan is gradually gaining strength and says a range of treatments have helped relieve his symptoms.
Acupuncture and reflexology have eased the pain in his muscles and yoga has enabled him to relax.
Jonathan also believes that the anti-depressants he has taken for the last six years have increased his physical strength.
He said: "I used to be able to walk just ten or 20 yards but now it's a reasonable distance. It's a learning experience where you set yourself limits of what you can do physically.
You know when you've pushed yourself too far."
"Before I had ME I used to be a keen footballer and enjoyed running, cycling and swimming. "
Kate Logan, 48, has found that taking progesterone and cutting yeast from her diet helped her cope with ME.
She is about to start graded exercise therapy at St Bartholemew's Hospital, where doctors can monitor her progress as she tries to regain strength.
Kate, of Beeches Road, Portslade, says one of the most difficult aspects of living with ME is the desire to lead a normal life.
She said: "I used to have an active social life, work full-time and go to the gym three times a week. It was very upsetting giving up work because you tend to lose your identity.
"I found it very difficult to adapt to not being an independent working woman any more. It is very frustrating and you do get depressed and miss the things you used to enjoy.
Your mind is still willing but your body is unable." Kate hopes the Government working party report will carve the way for an increased awareness of why ME is such a serious illness.
She said: "Sometimes I feel we have moved forward from the days of yuppie flu' but people are still struggling to get financial benefits because the illness is not properly recognised.
Hopefully the report will also prompt more research." Sussex ME/CFS Society chairman Colin Barton is a member of the working party which reports on the diagnosis, care and treatment of people with ME.
With more than 4,500 people with ME in Sussex, Colin believes it is essential for the illness to be fully understood.
He said: "We are not asking for special treatment, just treatment equal to that offered to people with other neurological illnesses.
"People with ME have been neglected for a long time.
"The report will provide more official recognition of the illness as well as producing guidelines for doctors and filtering out uncertainties."
To contact the Sussex ME/CFS Society call 01273 778890.
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